Pages

Monday, January 4, 2010

2010 is going to be a big year for our family

My youngest is sick. He'll be okay, it's just a cold, but everything hits him harder than it does the other two. His vital signs don't do what they should. His lips will turn blue in the tub, the same tub Middle Child is frolicking happily in full of perfectly warm bathwater, and his body temperature does weird things. His gastroparesis flares up. He'll go from coughing twice over the course of a slightly whiny but otherwise perfectly normal afternoon to shivering miserably under crib-quilts wrapped around him in Big Child's arms while I run for the thermometer and the extension tube to give him some meds through and then spend days vomiting any time I give him more than four ounces at a time without Zofran (and sometimes even then).

When he's healthy and doing well it's easy to forget there's anything wrong with Little Child; sure he eats through a g-tube and takes three prescription meds per day to keep him doing okay from a GI and hematology standpoint, but usually he's the outward picture of good health. Plump cheeks, still has creases in his sweet chubby thighs at four, tires easily but plays hard.

In fact, and if you'd told me four years ago that this would happen I would've laughed in your face, sometimes I don't think about his medical issues beyond remembering to give him his meds for days or even weeks. I'm so used to his g-tube that now when another child asks "what's wrong with him?" at the pool I tend to do a double-take the way I would with either of my other children, to see what is wrong and then...oh, right.

What we know: he has a heritable connective tissue disease, the same one I and both of his brothers have. He has multiple protein allergies and intermittent gastroparesis, as well as a mild bleeding disorder. What we don't know: how much all of those things necessarily have to do with each other and whether the things that do NOT appear to be related to the genetic issue (namely the GI stuff, the need for an elemental diet and a g-tube) will ever get any better (or any worse).

So his getting SO sick from just a cold is an unwelcome reminder that he's not as healthy as he looks. His GI specialist (who is one of the best in the country) says that in his experience about half of the kids with Little Child's types of GI issues grow out of them by age five, and so we're going to hold off on further testing (which would be invasive and unpleasant for him as well as extraordinarily inconvenient since it would involve traveling cross-country) until he turns five and then revisit the issue (although, since there are no treatments for what he's got going on right now that he's not already on, I'll probably decline the testing again then unless there's a new discovery that would change his treatment plan if it's X, cure him entirely if it's Y, or give us useful information about his longterm prognosis if it's Z).

2010 is going to be a big year for our family, not only because Little Child turns five this year but also because I'm getting married a week from today. Three kids with special needs (two of them developmentally delayed) plus a new step-parent (who happens to be a multiple organ transplant recipient--when I told my friends someone actually said "God do you really NEED another passenger on your own personal short bus?") should be interesting. I'll let you know how it goes :)

MFA Mama has started keeping a personal blog again since her last HP posting.

My son has a "what we know" and a "what we don't know" too. And our "what we don't know" could be copied straight out of your post except for the specifics of the genetic issue."What we don't know: how much all of those things necessarily have to do with each other and whether the things that do NOT appear to be related to the genetic issue.... will ever get any better...."Oh how I wish there was a single word for that, that could be uttered as explanation in so many situations. A single sentence for it is an achievement!Best wishes for your new marriage.

Totally pouring through your archives - and I just had to comment on this one. People laughed when I married Hubby (he of the just-had-his-second-kidney-transplant) since I am not the healthiest person myself. Now with the special needs twins in tow people make jokes about us taking family vacations at hosptials in exotic locations. Ha. ((hugs))

We're Hopeful Parents...Are You?

Our kids have all kinds of special needs, mild to severe. Some of us grieve the loss of our children. We do the very best we can, which often takes a toll on us. We come here to share our feelings with other parents who understand. We're searching for every parent of a child with special needs. Welcome!